The View From Inside The 'Tick Tornado'

Journalist-patient Explores Lyme Disease

"Starting in the early 1990s, after we moved from a city apartment to a wooded property in Westchester County, New York, our family began to get sick," she writes in this sober but scary book.

The author's knees became so swollen that she had to descend steps while sitting. Her husband, Mark, was so mentally incapacitated that he was forced to quit his job as a newsletter editor. Their youngest son, David, slept 15 or more hours daily and had to drop out of school. Their other son, Jason, spent his days in a bathtub, drifting in and out of consciousness while steam eased his pain.

Did they have Lyme disease? It took years to get a positive diagnosis, and even now it is not clear if one or more family members had Lyme alone, or perhaps a combination of ugly tick-borne ailments.

A science and health journalist, Weintraub writes clearly and passionately about a mysterious illness that has confounded physicians, patients and scientists for more than three decades, while she tries to balance personal narrative and objective journalism.

"Cure Unknown" has particular relevance to Connecticut. The first cluster of cases was discovered in Old Lyme, hence the name Lyme disease.

Debate about the diagnosis and treatment of Lyme is "one of the most vicious medical wars we've ever seen," Weintraub writes. One tempest involves short-term vs. long-term antibiotic treatment. Some scientists and doctors claim that Lyme is relatively easy to diagnose and treat. If symptoms persist, they argue, then the illness must be something else. Others respond that tests for Lyme are unreliable and argue that many people face a lifetime of debilitating mental and physical ailments unless they receive long-term antibiotic treatment.

After Lyme was identified as a bacterial infection, health agencies recommended early diagnosis and short-term antibiotic treatment. However, symptoms vary so widely and the tests are so unreliable, Weintraub says, that countless patients with Lyme are sent home without treatment, leading to long-term illness.

Lyme has been linked to chronic fatigue, psychiatric illness, Alzheimer's, seizures, ALS, fibromyalgia and Parkinson's, but the nature of the links is murky. Does Lyme spark other illnesses or merely mimic them?

Doctors have found themselves trapped between patients and regulators. Patients flocked to New Haven physician Charles Ray Jones when he began treating chronic Lyme with long-term antibiotics. But Lyme experts at Yale and the University of Connecticut called him a fraud, and the state Public Health Department last year fined Jones and placed him on probation.

Physicians increasingly are afraid to treat Lyme aggressively for fear of being similarly hauled before medical boards. Weintraub concedes the dangers of long-term antibiotic treatment, including the creation of "superbugs" resistant to antibiotics, but asserts that the risk must be weighed against the reality that untreated patients can face a lifetime of suffering.

The spread of Lyme has been linked to a staggering rise in the deer population and to the construction of suburban houses "in the path of the tick tornado." After years of living near woods in a "paradise" that proved toxic, the author and her family moved four years ago to a high-rise in Stamford to escape the ticks.

Although Weintraub strives to fairly report all sides of the Lyme debate, she admits up front that her bias is toward patients. Too often, though, she relies on what patients tell her about their doctors without getting the doctors' side of the story.

"Cure Unknown" also occasionally veers into arcane science, almost as if Weintraub were writing for a medical journal rather than a general audience.

That said, Weintraub has written a comprehensive and compassionate guide to a dreaded illness named after a bucolic, tick-infested town on Long Island Sound.

Bill Williams of West Hartford is a free-lance writer and a member of the National Book Critics Circle.